Mayo Clinic Connect
Is there anyone else that has been diagnosed with this?
Liked by Teresa, Volunteer Mentor
@brenda88. I take both Metoprolol 50 mg 3 times a daily and Isosorbide 120mg in the morning it does give you headaches lasting 2weeks for me. If you are on Facebook search Prinzmetal Angina support it’s a closed group helping each other. I see a Cardiologist in Rochester. I wasn’t able to have heart bypass so they put in a Spinal Cord Stimulator to help with pain. My cardio Dr told me this rare condition is extremely painful. If you haven’t done a full blood work up start making phone calls to see if you can find a Hematologist that is familiar with PA. It’s very important your potassium, iron, magnesium and Vit Dis enough to support your heart. If your upset try breathing slowly in and out. They may give you anxiety meds which will help. I highly recommend keeping a journal. When the spasm starts ends, what were you doing, heart rate and blood pressure and describe the pain where it is. Is it tight, squeeze, heavy pressure etc. also list when you took a nitro did it relieve any symptoms ❤️Praying
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@cherfenn, have you had pharmacogenomics testing?
Yes I have Has Coronary Artery Spasms aka Variant Angina, PRINZMETAL Angina since I was 41 and am 63 now. I had NSTEMI dec 2016
We have support groups on the following facebook groups many have both Coronary Microvascular Disease (MVD or CMVD)
& CAS Cornary Artery Spasm
‘Coronary Artery Spasms’ ‘coronary artery spasm (prinzmetal’s angina) support group’
I was pretty stable with only a week or so of attacks every few years until 2010. When I developed hypoxia, Tachy/Brady. Hypertensive Emergency. I was referred to and traveled to Mayo AZ & Rochester both. I saw Dr. Abhiram Prasad until he left Mayo and went to UK. I then diverted an airplane flying back from Mayo. SO I then worked my way up the Colorado University system to top Cardio & Pulmonary and was then Referred to National Jewish Health NJH Denver. NJH it was detremined that I have not Only Coronary Artery Spasms aka Variant Angina (CAS) , Coronary Microvascular Disease (MVD) but also tracheobronchomalacia (TBM)., fibromuscular dysplasia (FMD) renal arteries and now a autoimmune issue They say Most Likely relapsing polychondritis. Meds are NIFEdipine 60 mg 24 hr tablet Take 1 tablet by mouth daily.8 PM Coronary Artery Spasm (CAS), Crestor 5 mg
verapamil 120 mg 24 hr capsule : Take 1 capsule by mouth nightly IN AM ****. Coronary Artery Spasm (CAS)
spironolactone 25 mg tablet Take 1 tablet by mouth daily.Reserve Potoasium
aspirin 81 mg EC tablet Instructions: Take 81 mg by mouth 3 times daily. when angian chew 3 as well
Coronary Artery Spasm
IMDUR ,isosorbide mononitrate 120 mg 24 hr tablet Take 1 tablet by mouth morning for Coronary Artery Spasm
arginine HCl (L-arginine) 1,000 mg Tab Instructions: Take 3,000 mg by mouth 3 times daily. , Potasium, Magnessium,
with attacks I take NIFEdipine 10 mg liquid gel capsule: Take 2 capsules by mouth 20 min apart up to 3 times daily as needed (for cp if sbp>90).
NitroGLYcerin spray 400 mcg/spray: Place 1 spray under the tongue every 5 minutes as needed for angina to 3x. So Nifedipine then 3 nitro spray then Nifedipine. Then I carry a leeter from my Cardiologist that stats I have VAS & MVD and if I present that even without ECG changes or increased Troponins I have CAS with cardiac flow deviation that causes my angina. It goes on to say I should be given IV Nitroglycern and remain on it until I can be titrated down with no angina.
Have you seen a Vascular Disease Specialist? I encourage you to see one. Did they look for Fibromuscular Dysplasia in you? Mayo missed my Fibromuscular Dysplasia.
I have brought it up with my PCP and when I see National Jewish this week I will bring it up there as well. My family all has issues with meds so highly likely genetic.
Liked by Kelly, Alumna Mentor
Yeah @cherfenn, if your family always had medication issues, I would definitely ask. Thankfully, I met a doctor in Mayo Allergy/Immunology who had experience with pharmacogenomic testing. These tests saved my life last year as I’m highly-polymorphic and can’t take most medications. I now have that knowledge moving forward regarding what to avoid, and we have the knowledge to know that my daughters will need to be tested, too.
I am a 65 year old female and was diagnosed with Prinzmetal last year. I was taking a beta-blocker for high BP and was having a lot of chest pain. My dr switched me to a calcium channel blocker and now I rarely have an epoisode. This weekend I was having a lot of knee pain from an injury and called after office hours for a pain med. The doctor on call didn’t know me and prescribed Tramadol. I felt faint and had pretty bad chest pain. I discovered that Tramadol has ephenephrin which is a vasoconstrictor! Does anyone know if there is a list of meds that are safe to take with this condition? I will certainly call my regular doctor and have a flag of some kind put on my chart to hopefully prevent this from happening again.
@the3shus Hi! My cardio thought for some time that I had Prinzmetal, but seems to have changed his mind. I think it was just a stage my Amyloidosis was passing through. Anyway, do have it checked, and do not be surprised if very little is found as a trigger for these spasms.
I wish dr. Took this more seriously. I was recently diagnosed and my cardiologist was not very concerned. Said I’d learn to deal with it. But it has altered my life.
It is serious. I highly recommend going to Mayo Minnesota if at all possible Facebook has Prinzmetal support group/coronary artery
I would if I could. So frustrated
If you join the FB group you may find a Dr plus you will find a load of information. It helps to know your not alone
How do we sign up in faceboik
After you sign into Facebook search Prinzmetal Angina Support Group it’s a closed group so you will have to join
Anyone knows where to get genetic testing for Prinzmetal?
I've heard Mayo is preparing to do Research to see if it's genetic. Facebook has a Prinzmetal Support Group and a lot of people are discussing it.
I was recently diagnosed with Prinzmetal Angina and my cardiologist wants me to go to a specialist to try to control my symptoms. Stress and physical activity initiate my chest pains and soon after, I am taking my nitro. After that, I am in bed for the balance of the day and maybe the next day. I have had two heart attacks and four cardiac catheterizations with the placement of three stents. I am hoping to find a specialist here at the Mayo Clinic to allow my condition to be better controlled. David
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